Six months ago I ended a 12 month holiday from my ADT + abiraterone. (In this post, I’m not asking for evaluations of the advisability of intermittency.) In making the decision to do the intermittency, my MO, among other things, said that the fact that I was on abiraterone was a positive factor for me relative to the key study done a decade ago that showed that intermittency was non-inferior to continued ADT In terms of future progression and survival. So I fully expected that following my break I would resume both Lupron and abiraterone.
The reason I am posting now is that when I decided to go back onto ADT plus abiraterone, my MO only advised me to go back onto ADT, or Lupron. She said that the absence of clinical trials that showed that intermittency with ADT plus something like abiraterone meant that she didn’t support me continuing on that doubet, even though that is the doublet I was on for about two years prior, during which my PSA level was undetectable over the latest six months. I pressed and pressed (“…why wouldn’t we continue with the formula that’s been working for the past two years?.”) but she did not recommend resuming abiraterone with Lupron. When asked if she would nevertheless prescribe it she agreed to do so, and I ended my break by resuming both Lupron and abariterone.
My confidence in my MO has been greatly shaken by her position. My fear is that she is so slavishly devoted to clinical trials that she neglects to consider things that have a decent chance of being helpful, even though they haven’t been confirmed by clinical trials. In this case, using the absence of an intermittency clinical trial that included abiraterone as a reason to discount the value of abiratetone post- intermittency seems bizarre to me.
My approach ever since my diagnosis has been to try to assess the probabilities that a certain diet or exercise or drug or procedure will help me to live longer. I personally do not insist on only clinical trial results. That seems to me to be putting on. Inappropriately narrow blinders in that it ignores different levels of evidence. Clinical trial evidence is arguably the best quality evidence, but I don’t think we should be ignoring all other data.
My thanks and gratitude to anyone who has gotten this far in my post. I invite your thoughtful responses.
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The recently completed EMBARK trial tested intermittent ADT+Enzalutamide or Enzalutamide monotherapy. You could mention that to your MO. You could replace Enzalutamide with Abiraterone.
"If the PSA at week 36 was <0.2 ng/mL, therapy was stopped at week 37 and restarted when PSA was ≥2 ng/mL for pts with primary RP, and ≥5 ng/mL for pts without RP. "
that is insane. When I was diagnosed with stage 4 my dr put me on lupron Zytega and chemo. This was before clinical trials showed the triplet therapy to substantially improve survival. I went to get a second opinion from UCLA and they said no clinical trial yet on triplet so they couldn’t recommend it. I didn’t listen. My point is logic is logic. Since adding Zytega to Lupron was shown improve survival some 40% the first time around, logic dictates it’s probably better the next time too. I’m two years into my second vacation. I did lupron and zytega after vacation # 1 and I’ll do the same after vacation # 2. Duhhhh. By the way, my last vacation lasted 18 months. This one is over two years and surprisingly, my PSA has been going down slightly the last 6 months so my vacation continues for now.
that’s great to hear Schwab. I think it’s also important to note that we are fighting apca not just a psa score. Often times we get so obsessed with a psa score and don’t lol at the big picture. For example, having a psma pet scan is helpful along with a psa score.
That’s really interesting as I have encountered a similar “slavishness”to protocols by my own oncologist. Glad to hear you overcame it.
The answer I guess is to choose a doc who thinks flexibly and as long as they are happy it will not cause harm, to take into account patients wishes. In your case it is difficult to see what harm could arise from your decision!!
I just finished my vacation after a three year hiatus (didn’t know how it lasted so long), I was on the shot and Abbie prior to the vacation. My Onc has now started me back on only the shot, I’ll see where my PSA ends up when I go back in for a blood draw in two months.
Thanks for posting this. Very informative. I was also dx with Oligometastatic, got triplet therapy, thankfully remission, and started my vacation after 24 mos on Lupron/Abir/Prednisone. I just hit 9 mos and hope for much longer....
I strongly advocate having a 2nd MO to bounce numbers off of and keep in the loop throughout your journey. My main MO was a bit hesitant to go the holiday route, probably because there is not a lot of data to quantify intermittent in the metastatic setting. I got some additional opinions and basically no one has data to say outcomes are worse as far as I know. For me it was worth it in terms of QOL. I'm closely monitoring my numbers with bloodwork and scans. I've always been aggressive in my treatment approach, so unless the SEs are intolerable, I would lean toward going back to doublet as you mentioned. Studies in general seem to show that treatments earlier vs. later work better in the long run.
I agree with you and I would find another Dr...get what you know works! That there are no studies that show IHT (intermittent hormone treatment) includes doublet dosing does not mean that, if you have used it and it has worked, that it should not be replicated in IHT dosing...crazy...
This is a study in IHT that I found that you, or others, may find useful...I am off ADT now for 18 months; so far so good...if it comes back I will go back on IHT and found this study interesting...TNX Rick
Studies Ive seen show ADT + any of the four is better than monotherapy. Correct me if I am wrong, but IHT isnt helpful if one has metastatic risk. BAT however is, after the second line meds fail.
I want to thank everyone for their thoughtful and helpful responses, comments, and suggestions. My next steps are to check out the references some of you have provided, have another very serious discussion with my MO, and start looking for a second MO. That last one feels like the most challenging since I want someone very scientifically rigorous, deeply experienced and thoughtful about all relevant data—not just clinical trial data—and able to sift and weigh evidence of varying levels of quality and certainty in an effort to come up with courses of action that seem well supported by science and logic. I’ve told myself since my Gleason 9 diagnosis 4+ years ago that I was going to have to place a number of bets on what to do or not do since science can’t answer all the important questions since it will always be incomplete and evolving. I want an MO who also looks at it this way.
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